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Friday, May 8, 2015

Hot Weather Doesn't Mix with Dysautonomia

This week has been so tough for me. Pretty much every single night I'm waking up with night sweats, nausea, vomiting and undetectably low blood pressure. Every time I eat, the same thing happens. So I haven't eaten or slept for 90% of this week. I've still been forcing my running. I started that nearly 4 weeks ago (3-6 miles per day) to try to get myself into maximum conditioning to help out my blood pressure for this summer. I've also been taking all my medications (mestinon, midodrine and bystolic) on schedule along with 3-4 liters of fluids, compression, and up to 10g of salt. I've tried caffeine, guarana, licorice, ginseng, monster drinks, etc. Nothing is helping. I'm miserable. I have no quality of life whatsoever.

Today I hit an all-time low. I was nauseous this morning so took my meds on an empty stomach and went out running to raise my blood pressure like I always do. Shortly after running, as I was trying to discuss Lyme (of all things) with someone who was just bitten today and needed to figure out how they were going to convince a non-Lyme literate MD to give them a month of doxy, I realized I was slurring my words. I couldn't pronounce things correctly. What the hell? I hate my life. I felt like an idiot. I went in a bathroom and cried. Eventually I regained my composure and pulled it together enough to eat something. About an hour after I noticed the slurred speech, it stopped.

The rest of the day I continued to feel like crap. Like always. Very tired, overheated (it was 92 degrees today) and frustrated with my whole life. I got home, ate a small piece of gluten free pizza (lying down because I can't handle carbs). Sure enough I started to feel my blood pressure drop from just a semi-normal portion of food. The above was my reading.

Earlier this week I knew I was heading downhill so I had already called my autonomic specialist's office. I hadn't slept in days, was barely eating and needed to figure out what to do with my blood pressure at night. I was asking about taking a dose of midodrine at night because I need to get some sleep. I had already tried all my other options before bed. My doctor wasn't in, so the nurse asked a doctor who wasn't familiar with my case. Her advice (which she gave to a nurse to relay to me on my voicemail) was that "my symptoms are not due to my blood pressure, call your PCP and don't take midodrine at night." Clearly this doctor put in no effort whatsoever. She never spoke to me and she didn't appear to even glance at my chart or come up with any type of advice that made any sense.

Needless to say I was pretty furious. This happens every single time that I need medical help desperately. My specialist has told me that he doesn't understand why doctors don't take me seriously when I need help at the ER or urgent care; yet his own office does the same thing to me! When I finally did get in contact with my doctor he was somewhat helpful although in the overall picture, my symptoms suck. My quality of life is non-existent and there is no plan about what to do to improve anything. The consult with Mayo? Completely worthless. Apparently whatever treatment or diagnostic ideas they had are not considered necessary by the neurologist who met with me for 5 minutes and wants nothing to do with my case. So I'm at a complete standstill. Well......not really. A complete decline is more like it. Doctors are probably just counting down the days until my BP drops permanently so that I'm no longer alive to keep harassing them for help.

I'm so aggravated. It would be one thing to live with these symptoms if they were well controlled. Let's see any one of my doctors try to function with blood pressure dropping like mine does. Most people wouldn't last one day with these types of symptoms without heading to the ER......let alone 4 years. I have absolutely no control of my symptoms and nobody cares. Why should they? They aren't the ones that have to live with it. They speak to me for 5 minutes and then put it out of their mind and go on with the rest of their day. Meanwhile I can't even stand up half the time and am left to ponder how I'm possibly going to spend the rest of my life like this with no hope, no cure, no effective treatment, no way to live a productive or normal life, no way to pay my debt, work in my field, or even complete normal daily tasks. Am I depressed? Yeah. And no I don't need a pill to cover it up. I need a real treatment for real physical symptoms.